Pathways to diagnosis: The lived experiences of obtaining a dementia diagnosis among care partners

Abstract Background Achieving a timely diagnosis of Alzheimer’s disease and related dementias (ADRD) has been challenging, and racial/ethnic minority older adults often have delays in their ADRD diagnoses despite having a higher disease prevalence. This qualitative study engaged care‐partners of patients to identify key barriers that they have experienced during their ADRD diagnosis process, ascertain their recommendations for addressing these barriers, and assess racial differences in the diagnosis process. Method We purposively sampled 11 Black and 10 White care‐partners (n = 21) of persons who were diagnosed with ADRD within the past two years. We conducted semi‐structured interviews to gather details and to identify the barriers/facilitators that they experienced. To prompt discussion, we asked participants to complete a card sort activity identifying occurrence and order of common events in the diagnosis pathway. We applied content analysis guided by life course theory to identify themes and to explore differences in diagnosis pathways between Black and White participants. Result Overall, about 70% of care‐partners were female, age 60 (on average), and 57% were adult children of persons with ADRD. Less than 30% of Black care‐partners reported having adequate knowledge about ADRD, whereas the proportion was 60% among their White counterparts. Most often, early signs of ADRD were first noticed by care‐partners. However, some considered these signs as part of the normal aging process. Care‐partners reported visiting multiple providers along the process, and some visits were related to other conditions. Some care‐partners noted that the involvement of other family members was a barrier to the ADRD diagnosis. Most care‐partners described the diagnosis process as difficult and devastating, and Black care‐partners discussed experiencing unmet needs along the process more frequently than White care partners. Some care‐partners suggested having a navigator that can walk them through the process would be helpful. They also shared that the navigator should be able to tailor services based on the needs, as each family’s situation is different. Conclusion This study highlights the unmet needs experienced by care partners along the diagnosis process of ADRD. Black and White differences were also identified. More person‐centered care coordination programs are needed to promote early identification of ADRD.